New Here! :)

[rainbow31472]

Heyla! Just found out there is an entire community of people with the same thing I have! HOW EXCITING! :) I was beginning to think I was the only one with CAH.. :)

I am a 30 y/o female, was diagnosed with CAH when i was 15. I read thro all the posts here, and didn't know half as much about CAH as I thought I did. So, its exciting, but almost scary to find what a dr could tell me when I go in for a head to toe exam by a gyn/endocrinologist next week, which, one would think would have happened WAY before NOW! With all my health problems, showing my body is something that just does NOT happen. With the help of my life partner, and my mom, its about time I get treated for this disease that has nearly ruined me physically and emotionally.

BUT, on the upside, its just good to know I'm NOT THE ONLY ONE! :)

Be Well, And go in Peace!

[Betsy]

Nope...you certainly are not the only one :p

Welcome to Bodies...not everyone here has CAH but several do, myself included.

Betsy

[Janet]

Finding out about ourselves usually takes a bit longer when you have a body like ours.
Have your partner or mom take notes when you see the doc next week. That way, you can really listen. There's often a great deal of information and medical terminology bantered about, so it would be good to have a list to search later on.

Let us know how it goes, and feel free to seek for more information from the online community. They are often the greatest and most knowledgeable experts around!

Glad you have found your way to here.

[rainbow31472]

Thanks for the advice Janet. This new endo gives so much info so fast that we are going to take notes. I have spoken with him on the phone, and gave a brief medical background, and since I was diagnosed 15 years ago, they are going to do a new lab work up and put specifics on the CAH. woohoo.... in this area, the going meds are birth control pills and spironolactone. i refused to take birth control pills, i have enough side effects from this damned disease, i don't need anymore. spironolactone takes so friggin long to do any good, it really isn't worth it, plus its a diuretic, so it makes me dizzy and screws with my blood pressure. they have done dna testing on the last 4 generations of my dad's side and found this runs rampant in the gene pool, but my daughter is just a carrier (Praise GOD!) and they are concerned about my next child we are trying to have, and they are supportive, but in the same breath, they remind me that my body isn't up to par. So, between now and the 27th, the gyn. gets to work on that end while the endo works on the hormones. I have to come to figure out these Dr's do not understand the need and desire most CAH patients have to live a normal life the best we can despite what we might look like. I have been fortunate in the past years to find friends that are as supportive and loving as my family, but they can't understand what its like to get up every morning and look in the mirror to see the effects. Growing up in a family that lived in Backwoods, USA, my mom didn't know that CAH has made many people IS'd, and I explained to her last night just how distructive this disease is. After alot of tears, she now understands that this just isn't something that will go away. I told her about all the support thats on the 'net, and sent her the URL.

Well, I believe I have spoken far too much, and just to lazy to hit the backspace key to get rid of it. :)

Be Well, and Go in Peace! Thanks for the warm welcomes!

[Janet]

You are more than welcome, and don't ever feel you have to apologize for long posts. I think it's kind of natural that since we haven't been able to say a word for decades, when we finally have a place to talk, the words just come rushing out.

I'm a CAH mom of two who are also (so very thankfully) just carriers. I can still remember how relieved I was to hear my daughter wouldn't have to live a simliar life. It has been the love for my children that has sustained me in my deepest turmoil. They are indeed my largest blessing.

Good luck finding out about "you", and don't hestitate to say to the docs, "Could you repeat that in English?"!!

[Glenn]

Awful nice to find people who understand where you're coming from, eh?

Glenn

[beach]

hi rainbow and welcome.... beach